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Pediatric Hospice Palliative Care Guiding Principles and Norms of Practice – Download

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Download.  PDF format: 66 pages. Published 2006.

This document is designed to guide health care professionals in establishing standards of practice, service delivery, program and policies for pediatric hospice palliative care, regardless of whether that care is delivered at home, in a hospital, in a long term care facility, or in a hospice. Its goal is to promote a standard consistent approach to pediatric hospice palliative care in Canada.

Table of Contents

What is pediatric hospice palliative care?
How does hospice palliative care for children differ from hospice palliative care for adults?
What is the role of pediatric hospice palliative care during illness?
Guiding Principles of Pediatric Hospice Palliative Care
The Square of Care: a Conceptual Framework

I. Child and Family Care
1. Illness/Disease Management
2. Physical Care (including pain and symptom management)
3. Psychosocial Care
4. Social Care
5. Spiritual Care
6. Developmental Care
7. Practical Care
8. End of Life/Preparation for Death Care
9. Loss, Grief, Bereavement Care

II. The Process of Providing Care
10. Assessment
11. Information-sharing
12. Decision-making
13. Therapeutic Interventions
14. Care Delivery
15. Evaluation of Care

III. Program Support Functions
16. Governance and Administration
17. Planning
18. Marketing and Advocacy
19. Quality Management
20. Research
21. Education
22. Caregiver Support/Worklife

IV. Resources
23. Human, Physical, Technology, Clinical Resources
24. Financial Resources

Appendix A Glossary of Commonly Used Terms
Appendix B Informed Consent
Appendix C Cultural Care
Appendix D Techniques for Negotiating Issues Influenced by Culture that are Important in End of Life Care
Appendix E Bereavement Risk Assessment
Appendix F Quality Management
Appendix G Research Priorities and Questions References